The Trust is now part of our lives and therefore we have to support them as much as they help support William and us.

Every penny you donate will help.

You can also donate by text by sending COTS69 £3 to 70070.

MarathonListing

Non Twitterers can look at runcotchrun on http://connect.garmin.com for tales and graphs of slow running.

The Story

After William crashed with Heart Failure in January 2012, he proved us all wrong by fighting back and his heart now functions almost normally. Whilst impressing his cardiologists with his improvements,  other symptoms were noticed and William was diagnosed with Barth Syndrome in April 2013.

  In layman's terms - Barth Syndrome is a disease that can cause heart failure, feeding issues, muscle weakness, the inability to fight infections and many other problems.

Big words - Barth syndrome (BTHS) is an inborn error of phospholipid metabolism characterized by dilated cardiomyopathy (DCM), skeletal myopathy, neutropenia, growth delay and organic aciduria.

 The Barth Syndrome Trust aim to find a cure for this sometimes fatal, often debilitating genetic disease but meanwhile help to save lives through education, advancing treatment and providing a community for those families and individuals affected.

To get the ball rolling, I ran the South Coast Marathon for the BST but then decided I wanted more and spotted the Viking Coastal Marathons. Two marathons over the 18th/19th Jan on the NE coast of Kent.

At the moment, it's 100 marathons before I strike 51,  this year should see me half way there with a total of 51 marathons (50 in the fight against Barth Syndrome).

Original challenge - I'm trying to help the Barth Syndrome Trust by running the Kent Coastal Marathon in September 2013. This will be my first marathon after deferring the 2013 London Marathon owing to an injury, which I'll now be running in 2014 for the Evelina Children's Heart Organisation (Another group whom have been part of William's life).

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